IN BRIEF

J. Owens, T. A. Dyer and K. Mistry

Raises concerns regarding the provision

of specialist services for people with
learning disabilities.
Discusses the importance of including
enhanced payments for general dental
practitioners to allow for extra time
necessary for care.
Suggests a model of access for primary
care organisations when commissioning
dental services.

OPINION

People with learning

disabilities and
specialist services

Valuing people1 and Valuing peoples oral health2 both advocate choice and inclusion for people with learning disabilities.
Research suggests that services and policy and guidance, while prescriptive and available, have not been effective in reducing oral health inequalities for people with learning disabilities. There is a risk that specialist services led by newly created
consultants in special care dentistry may have the unintended effect of reducing choice if general dental practitioners are
encouraged to refer all those with learning disabilities. A modified model of access is proposed that primary care organisations could use as a commissioning tool for dental contracts to facilitate choice and maximise involvement in oral health
care for those with learning disabilities.

Background
In the UK, over 985,000 adults are registered as having a learning disability;
796,000 are aged 20 or over yet only 20%
of them are known to the learning disability services. By 2021 it is predicted
that there will be more than one million
people with learning disabilities in the UK.3
In light of the recent debates around specialist services for people with disabilities
in the dental literature,4-8 this predicted
increase has implications for the delivery
of services in the UK.
Valuing people 1 was written with the key
principles of Rights, Choice, Independence
and Inclusion at its heart. Its origins came
from the historical omission of people with
learning disabilities from health policy. Its
aim was to ensure that people with learning disabilities are not excluded from their
choice of services so that their rights and
dignity of independence are maintained
and wherever possible they are able to
access the same services as people without disabilities. Valuing peoples oral

1*-3

Department of Oral Health and Development,

University of Sheffield, School of Clinical Dentistry,
Claremont Crescent, Sheffield, S10 2TA
*Correspondence to: Dr Janine Owens
Email: jan.owens@sheffield.ac.uk

Refereed Paper
Accepted 1 February 2010
DOI: 10.1038/sj.bdj.2010.204
British Dental Journal 2010; 208: 203205

health2 builds on Valuing people using the

same principles, but was also designed to
complement Choosing better oral health9
which was written to inform and influence the emerging commissioning role
of the primary care organisations (PCOs)
and improve services for people with
disabilities. Valuing peoples oral health
acknowledges that applying a one-sizefits-all approach is not useful for adults
and children with disabilities when trying to improve oral health and increasing
choice is a necessity. Furthermore, it envisages general dental practices as a focal
point of a fully integrated preventive care
pathway with a need to ensure that the
local dental practice is available and accessible to those who do not require specialist
care routinely [Our emphasis] (p 25).
In a recent paper 4 Gallagher and Fiske set
out the professional challenges for special
care dentistry. One of the key challenges is
how NHS dentistry is now provided with
the introduction of the new contract, and
the change to local commissioning of dentistry through PCOs. In tandem with these
changes are the development of a speciality in special care dentistry and the opening of a Specialist List in October 2008.5,6

Definitions of disability
and the Steele report
The definition of disability as identified by
the Joint Advisory Committee for Special

Care Dentistry (JACSD)5 is: Individuals

and groups in society who have a physical, sensory, intellectual, mental, medical, emotional or social impairment or
disability or more often a combination of
a number of these factors. In attempting
to be inclusive, this definition could be
interpreted as implying that people with a
wide range of impairments are a homogenous group. As well as unintentionally
disabling some people with impairments,
it also suggests that all could fall under
the remit of special care dentistry. While
we agree that a speciality for special care
dentistry is timely and much needed, we
also echo Gallagher and Fiskes assertion
that All people with disability should have
access to NHS primary dental care.5 This
implies that, as well as specialist services,
provision should come from non-specialist
general dental and salaried dental services.
The Steele report 8 identifies that access
to care is a problem for people with disabilities and recommends that dental contracts are developed with much clearer
incentives for improving health, improving access and improving quality (p 7).
While we fully support the aspiration to
improve health, access and quality for
all, the wording of the Steele report and
the JACSCD definition of disability taken
together could be construed as meaning
that all people with disabilities should be
cared for by specialist services. The risk is

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2010 Macmillan Publishers Limited. All rights reserved.

OPINION
a reduction of choice of services for people with learning disabilities in particular
if practitioners are encouraged to refer to
specialist services all patients perceived to
fall within it. This is of particular concern
for such groups when need for care is often
not expressed as demand and when they
are often unable to choose.
The definition of a learning disability
in Valuing people is: the presence of a
significantly reduced ability to understand new or complex information, to
learn new skills (impaired intelligence),
with a reduced ability to cope independently (impaired social functioning); which
started before adulthood, with a lasting
effect on development.1
The International Classification of
Mental and Behavioural Disorders10 categorises people with learning difficulties
in terms of their measured level of intelligence or Intelligence Quotient (IQ). For
example, categorisation of a learning difficulty (disability), according to the world
of medicine, means an IQ of 50-69 (mild),
35-49 (moderate), 20-34 (severe) and less
than 20 (profound), alongside detailed
clinical descriptions of each category.
Any IQ measurement above 70 is within
normal limits. Even though Valuing people and various other authors11,12 dislike
these definitions because diagnosing a
person with learning disabilities separates
them from the normal population, and IQ
alone is not a sufficient reason for deciding
whether individuals should be provided
with additional health and social care
support, for the purposes of this paper it
is probably useful to use these categorisations to illustrate which categories cause
the authors concern. People with moderate/severe to profound impairments should
have a specialist dental service because
they are most likely to need one-to-one
care and support, and are more likely to
have higher needs. Whereas not all people
with mild to borderline moderate learning
disabilities will necessarily need specialist
dental care. There appears to be an argument for the provision of case by case
consideration and not lumping people
together under one category.
One way of ensuring that a dental contract is developed with clearer incentives
with the inclusion of discretionary payments for non-salaried dentists to allow
for the extra time required when working
204

with people with learning disabilities.13-15

Such an approach could be evaluated in a
Steele demonstration pilot.
One example of the importance of allowing for extra time is for the care of some
people with autistic spectrum disorders
where many visits may be needed before
an individual can sit in the chair. A visit
to the dentist can be especially traumatic
because of different factors such as anxiety
related to change in environment: lights,
different noises, people, ways of dressing,16
tactile and sensory issues,17 a lack of understanding about the purpose of the visit and
importance of oral health,17 and because of
the nature of dental treatment (even if it
is only a check up) as an invasion of body
space.17 Once these factors have been successfully addressed there are few reasons
why dental treatment cannot proceed as
for patients without autism spectrum disorders and in a general practice setting.

Ensuring access to quality care

If those with learning disabilities are to
have access to quality services, what factors should be considered? As for access to
general healthcare, different authors have
suggested that access comprises more than
just physical access for those with learning
disabilities.18,19 In dentistry, Dougall and
Fiske,20 conceptualised access to care as
comprising four key dimensions:
Access to the building
Access to the dental surgery
Access to the dental chair
Access to the mouth.
However, for Penchansky and Thomas,21
the concept of access is more complex.
Their dimensions of access comprise:
availability, accessibility, accommodation, acceptability, and affordability.
When blended with Maxwells22 dimensions of health care quality (effectiveness,
efficiency, equity, access, acceptability,
and appropriateness) a more practical and
workable version of access is provided that
can be applied to any health care, including for those with learning disabilities. In
summary, access may be defined as having
six dimensions:
Availability: the volume and type
of services in the area
Accessibility: the physical means by
which the client reaches services (this
can be both inter and intra building)

Accommodation: how easy it is for

the client to get through the door
(for example opening times, flexibility
when making appointments)?
Acceptability: the level of satisfaction
expressed by the client
Appropriate to need: is the service
user obtaining what s/he requires
from the profession?
Affordability: the costs of the service,
and ability to pay for it.
In a recent study with people with learning disabilities, this modified framework of
access was used as a framework through
which to view the data;23 the findings
illustrated that dental care for people with
learning disabilities varied greatly. While
there was evidence of good practice under
all six dimensions of access, there were
also concerns expressed about: the attitudes of dental staff towards people with
learning disabilities; the lack of collaboration between and within services; the lack
of continuity of care and choice; and a
failure to acknowledge that people with
learning disabilities have the same rights
to treatment as others. The research, from
the perspective of participants and carers
suggested that while policy and guidance
is prescriptive and available, awareness
among the dental and allied health professions is poor. Consequently care received
by people with learning disabilities did not
meet the aspirations of Valuing people and
Valuing peoples oral health.1,2,23 If we consider these findings alongside a predicted
increase in the number of those with learning disabilities in the UK3 and the simultaneous establishment of specialist services,
then the possibility is that existing unmet
need is likely to increase. Recently, policy
has sought to address healthcare inequalities experienced by people with learning
disabilities by changing planning methods.9,24 Applying a bottom-up approach
to dental services means that planning
would start with the person, finding out
their needs and preferences, and then fitting service delivery around the person,
rather than utilising the present method
of service delivery where the person has
to fit the services. This requires listening to people with learning disabilities to
find out what they want from services and
attempting to facilitate choice. However,
part of facilitating choice for people with
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2010 Macmillan Publishers Limited. All rights reserved.

OPINION
learning disabilities rests with PCOs. Using
the described modified model of access as a
commissioning tool for new contracts may
ensure all areas of access are optimised,
facilitating choice and inclusion, respecting individual rights and independence,
and enabling an increase in quality care.

7.
8.
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10.

1.

2.
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2010 Macmillan Publishers Limited. All rights reserved.